Emma Heming Willis is in the midst of promoting her new book, “The Unexpected Journey: Finding Strength, Hope, and Yourself on the Caregiving Path.”
Entertainment Weekly offered a preview of her upcoming TV interview on MS Now, for the series “Because We Care with Richard Lui.” In the magazine’s sneak peek at the interview, she shares details of her life with husband Bruce Willis since his diagnosis of frontogemoral dementia, or FTD
There Are Still ‘Beautiful Moments’
As Heming Willis explained, the purpose of her book is to shift the narrative on dementia.
“Bruce, he’s very present,” she shared.
“We have still so many beautiful moments of joy and connection, and I think that’s really important to share because I think there’s such a negative narrative around dementia,” she said in the interview, via EW.
“We need to be careful and reframe that. When we think about that or don’t want to talk about dementia and put it in a corner, the person living with the disease and their caregiver aren’t seen, they aren’t supported,” she explained.
She added that “it’s important to know that it’s hard and it’s a terrible disease, but we have so many moments of joy and connection that aren’t your norm, but it’s okay … We’ve learned to adapt and show up for Bruce.”
Finding Moments of Joy
GettyIn December 2025, Heming Willis recalled how her husband’s illness led her to a community of people going through the same thing she was.
“I remember one of the first FTD events I attended, an educational conference. I was like a deer in headlights,” she wrote via Instagram Stories, as reported by Parade.
“The room was filled with current and former FTD caregivers, and I just sat there, wide-eyed, watching people talk, smile… even laugh. I remember thinking, How can this be? How are they laughing? How can there be joy in the midst of this disease?” she remembered.
“But that moment changed something in me,” she added. “It gave me new perspective. It gave me hope. If they could walk through it and still find these moments of joy, maybe I could too.”
A ‘Quiet Pain’
In a blog post she shared in December 2025, Heming Willis admitted that being a caregiver to her husband had been particularly tough during the holiday season.
“Before anything else, I want to say this, it’s okay to grieve. Grief doesn’t only belong to death,” she wrote. “It belongs to change and the ambiguous loss caregivers know so well. It belongs to the realization that things won’t unfold the way they once did.”
She continued by recalling how much the “Die Hard” star enjoyed the holidays.
“He loved this time of year- the energy, family time, the traditions. He was the pancake-maker, the get-out-in-the-snow-with-the-kids guy, the steady presence moving through the house as the day unfolded,” Heming Willis wrote.
“It can arrive while pulling decorations out of storage, wrapping gifts or hearing a familiar song. It can catch you off guard in the middle of a room full of people, or in the quiet moment when everyone else has gone to bed,” she added.
